It appears to be that time of year again. The commercials are in full swing, the end caps at the stores are displaying weight loss items, self help books, and all sort of gimmicks to help you achieve your NEW YEAR RESOLUTIONS. I know little about this tradition, but I know that I don't think that I have ever kept one new year resolution.
After coming home from the hospital, just days before a new year was to begin, the traditions of setting a resolution struck me as odd. I had just spent five and a half months away from my home. I found a new room that my family called home. I spent most of my days hanging in an ICU praying my baby would live to see another day. Now, finally at home, I have this child that I am trying to figure out what to do with. Looking around the living room, new pieces of medical equipment was scattered all over. There were cords and paperwork and phone numbers and burp clothes and feed pumps, it was not at all how I envisioned bringing my child home.
The problem, it did not matter. It did not matter what I envisioned, this is how God had planned it and at was perfect. She was home and not much else mattered than that! Praise God that for the first time in months, we were all under the same roof. Praise God, the first time in months we could sit as a family without nurses and machines interrupting our thoughts and conversation.
I realized then that a new year resolution actually takes you on a journey. I don't believe it is about the end result but the journey that you took, what you learned, who you are now, and what was taught to you that is the most important thing. I realized that we are missing out by focusing on the end result when it is the journey that counts.
When I first heard of Lydia's diagnosis, Down syndrome, I was given a poem called Welcome to Holland. Maybe you are familiar with it but it talks about wanting to go somewhere and you end up in Holland. It is not where you intended but it is not bad. Things are different, but there is just as much beauty and majesty as the other place. While at first you may compare where you wanted to go to Holland, eventually you settle into your new life.
It is the journey that means the most. Yes, I was nervous about many things with Lydia. I have to say that her medical issues has overshadowed many of the typical doubts about Down syndrome. However, now that we are transitioning into not as sick of a child, there are more and more things about Down syndrome that creep up and leave me in a place I don't like to be. However, it is not the end result, it is the journey, the learning process, the shaping and the molding that is the most important piece to learning about your new surroundings, learning about where God has placed you.
There are many times that I sit and I compare Lydia to the other girls. I know I shouldn't, but I do. However, I realize more and more that Lydia is who she is suppose to be. She may never intend to be the brightest scholar in the world, she may never be a six foot tall basketball player. But she can teach you about joy, about simple things, about love, about laughter, and about being cute. Some things are very similar to Ellen and Allison and others are completely different. And that is just fine. She is right where God wants her to be.
So, if I were to set new year resolutions for last year it would have been to read the Bible in a year and to lose weight. Here is my take on both of them. While I am currently losing weight, I probably have gained more weight than I have lost! I will end the year on being three months behind in my read through the Bible in the year. Does that mean that I have failed?
NO! What I have learned is more valuable than accomplishing those resolutions (if I would have set them!). I may have not finished my read through the Bible in a year, in a year. However, I do believe that God gave me the verses that I needed exactly when I needed them. I know that I made a very diligent attempt at finishing in the year and I was leaps and bonds ahead of where I was the year before. But, I also know that my personal relationship with God strengthened a lot simply because I was being more obedient. No one success all of the time the very first time around. I am not perfect, but I have created habit. I am proud of myself for where I am. See the process of teaching myself to be obedient to get up early and read the Bible, to put my relationship with Christ first, to realize how much better I function when I am walking in God's way, is much more valuable than saying I completed the Bible. It was more than completing a check list, it was about walking a journey, learning and exploring my relationship.
My weight. It has been a battle for a long time. I, however, do not want to get on a diet craze and crash. In my life, I also know that food runs much deeper than just another new diet. Feeding is always a struggle with Lydia. I have learned so much about food and what it is used for for our body. I have learned healthy ways of eating and managing stress. I have learned why God made for and the purpose. I have also learned a lot about faith. Faith in God that He will provide, He will teach, and He will allow success in His time.
I can't quite put into words all of the things that I have learned myself about eating, but I know that I am in a good place. Yes, I have lost weight and I have lost inches, but the most important thing that I have gained is a new perspective. A new perspective on life and weight. My weight did not just come on in a year and it represents pain and stress and running away from problems. I knew that I needed to deal with a lot of that before I was able to successfully change my lifestyle and learn things in moderation. I also learned that I need to know this so I can teach my children very healthy habits and deal properly with Lydia and her feeding issues.
I have to say that right now I am not be any thinner than when I started off last year, but I am healthier in so many ways. I am in a great position physically and mentally (I'm in a good routine of getting exercise and managing stress, and eating for the purpose of nourishment and not just pleasure, I also am managing the stress of feeding Lydia much better). It was a process to learn this, to unlearn what I had been taught and obedience to step forward. This is an important step if I want to do this properly and honor God. I can truly say I am happy with this progress.
Maybe none of this makes sense, maybe it makes perfect sense, but to me the new year resolution craze is silly. Lydia and the life of Down syndrome has taught me that my expectations are only that. Things and situations in life will happen, they will change you, and they will take you on unexpected paths. By being stuck in one thought of thinking, you rob yourself of the journey; the most important part of your life.
I have found too, that some journeys are very difficult. Sometimes you may think that you will be a mom for your entire life and your child dies suddenly, leaving you empty handed and on an unpredicted journey of grief. You may think that you will have a healthy child and you learn about the diagnosis and it takes you on a journey of living life in the hospital, not knowing what will happen from day to day, it will stretch you and teach you and your path will look much different.
No one can tell their path from day to day. God has the entire picture and He is working everything for our good. What I have learned about new year resolutions is to enjoy the journey. Things often don't happen in a year and your path will more than likely take an unexpected curve or dip, but that is OK. Learn, embrace, have faith, and hope in God that you are walking this path to be the person God intended you to be.
I pray that this year I can continue to fully embrace everything about having a child with 47 chromosomes, that I can continue to embrace the feeding journey and rock, and that I am obedient to God and the path that He chooses for me. Here's to another year of Resolution Journey!
Tuesday, December 23, 2014
Thursday, December 11, 2014
You Were Chosen
I was chosen for this journey. This journey was thought out, carefully crafted and given to me. This is my story, this is my life. I have had thoughts in my head over and over about this chosen life. I have many different thoughts that make perfect sense, but when I come to type there is nothing. Yet, I have a push inside to write about this chosen path for me.
I would have never thought that I would be sitting in these shoes, but I can't imagine my life any differently. I would have never thought that I would want to care for another human being the way that Lydia requires, but I am lost when I am not caring for her. What I never thought I wanted, I ended up needing and that is why I was chosen.
God does give us more than we can handle. And that is because we were not meant to handle it on our own. We were never meant to walk this life by ourselves, but with God front and center. With God, all things are possible. We have greatly confused that image. I have learned that too many times to count on this journey. I have seen what happens when I handle things by myself and I don't put God first. It is always better when God is caring me, when He is helping me, when I am seeking His advice. Without that, I fail, I struggle, and I mess up big time.
As stressful as the days are, as frustrated as I get with Lydia, as much as I question if I am doing anything right, as much as I struggle with advocating for Lydia; this is what I was meant to do. This is where God wants me and He has a purpose. While I may question and I may not understand, He sees the entire picture.
Our life is like a puzzle. We can only see one piece at a time. We are not able to see the entire picture. We fumble and we fail trying to find our place. We think we fit here and then something else comes up and we find that was not the right place. Sometimes our pieces are so dark and it seems near impossible to be able to even attempt to find where the piece fits. Sometimes we work on one side of the puzzle when we should be at the exact opposite corner.
God, however, sees the entire picture. He has created a masterpiece and we must trust in His plan that He will finish the good work He started. He knows what the picture on the box looks like. He knows where every piece fits together and He knows how they fit together. We don't have to fumble around trying to find our place, He will guide us.
Even when we are in a dark place, the light will come soon and it will be glorious. But we must not give up because each and every piece is needed to make the final masterpiece. He works everything for the good of those who love Him. Every trial, every dark spot, every circumstance all has purpose and meaning in His timing and in His plan. We are not meant to understand but to trust and to allow Him to create us to be the servants He wants us to be.
As I have struggled a lot lately, I have thought over and over about this. It is so true but so hard. I think back to days before Lydia and that seems like such a long time ago. Sometimes I cringe to think of the person I was before her. Sometimes my life now is so much a part of who I am, I cannot fathom that life anymore.
The daily tasks of Lydia have been wearing me down. Feeding her, trying to figure out what she will eat, making sure she gets enough to eat, juggling her health and education, managing her doctor appointments and her therapy appointments. Trying to make time to have her just be a kid. Trying to parent two other girls and making sure I am meeting their needs. Trying to put time in on my marriage to make sure that is healthy (if that is not healthy than none of my other relationships with my kids are healthy). And trying to find quiet time to study God's Word and let Him pour himself on me (I often struggle with this, but this is the most important part of my day). And then with whatever little time is left, I try to work on me (keeping fit, eating right, taking time just for me, exploring hobbies).
This is the path that was chosen for me. I have to remind myself of that every single day. Some days I struggle with it. Some days I want to curl up and cry. My child is so far behind. That is a hard pill to swallow at times. I compare her to other kids with Down syndrome and see that she is even farther behind than they are and I wonder if I am doing everything that I should be doing. I know I shouldn't do that, but this is reality. I want the best for my child and sometimes I think that love is not enough (I know that's a foolish thought, but it's true). **She is also on a chosen path, just for her. She was not meant to have 46 Chromosomes, she was meant to have 47. She was not meant to have a "normal" anatomy. She is right where God wants her and she is teaching others about self confidence, happiness and true joy. She also is right where she is meant to be!
Sometimes when we are sitting in a room with many doctors and we are trying to figure out what is wrong with Lydia, I feel like I am crazy. They shake their head, knowing something is not right, but there are no answers. When there are no answers I question myself, my ability, and wonder if this is all just made up. I doubt when I should not. But it makes me go crazy trying to think about what to do next. I know people around me have given me those stares and seem to whisper behind me (I think this is probably just my insecurity but this is what I feel). I try to convince myself I am crazy. When in all reality, I am doing what God wants me to do. He alone has placed me on this path and if I am looking to Him and following in His ways, then I should not doubt.
This is the life that was chosen for me. With God's help I can overcome these doubts and insecurities, I can rise and become the very best mom to all of my girls; just as God chose me to do. With God's help I can be the very best wife to my loving husband and I can be a faithful devoted disciple. It is possible; but not on my own.
And to look to someone else's journey and judge is not fair either. They were chosen for something different. I feel like if I could understand this better, I may be able to help someone out and I may not feel so judged. I don't think I ever expect someone to understand my journey, but I should not then try to understand someone else's either. I can share my story in hopes that someone might be going through the same things and can get hope from my path.
Sometimes it does feel lonely. I have seen it all too often people pull away because they don't understand, they are scared of your circumstance, or because you have changed. However, we must remember we all go through seasons and God gives us the blessing of true friends. God is also always there for us. He will never leave us nor forsake us. Mary and Elizabeth in the Bible were given similar circumstances and they could support one another. While God is the ultimate hope, it never hurts to have earthly friends for support and help.
But sometimes I forget that I was chosen for this journey and not someone else. I am quick to judge and pass judgment. I am quick to feel alone and I try to handle things on my own. I forget I have the ultimate friend, I have unconditional love, I have forgiveness, grace, mercy, discipline, and if I am willing to obey Him, He is willing to bless me.
On this journey, I was chosen to learn certain things, not anyone else. On their journey, they were chosen to learn their own things. However, I can come alongside someone and be a friend, I can encourage and I can help. I have to remind myself of this because I can get wrapped up in my own circumstance very easily. I have to remember to continually seek to glorify God in every situation and circumstance. I also have to remember that I am only accountable for my actions, so I better continue to look at myself and see how I can improve on me.
And because I was chosen I am a better person, I have learned some amazing lessons, I have faced some very unthinkable situations, I have been tested to my max, and I have failed, and I have been blessed. I have changed who I am, how I think, how I love, and I have become a better person; all because I was chosen.
For me, it was one special child that God gave me so I could learn these lessons. Sometimes I have to remind myself over and over and over in the heat of pain, frustration, anger, exhaustion. But in the end, to see that smile, to feel her hug, and to watch her progress is such a blessing. It really is all I need. And when my eyes are rightly fixed on Him, I can look on even the hardest time and bring Him glory because He loved me enough to choose me to be right here!
I would have never thought that I would be sitting in these shoes, but I can't imagine my life any differently. I would have never thought that I would want to care for another human being the way that Lydia requires, but I am lost when I am not caring for her. What I never thought I wanted, I ended up needing and that is why I was chosen.
God does give us more than we can handle. And that is because we were not meant to handle it on our own. We were never meant to walk this life by ourselves, but with God front and center. With God, all things are possible. We have greatly confused that image. I have learned that too many times to count on this journey. I have seen what happens when I handle things by myself and I don't put God first. It is always better when God is caring me, when He is helping me, when I am seeking His advice. Without that, I fail, I struggle, and I mess up big time.
As stressful as the days are, as frustrated as I get with Lydia, as much as I question if I am doing anything right, as much as I struggle with advocating for Lydia; this is what I was meant to do. This is where God wants me and He has a purpose. While I may question and I may not understand, He sees the entire picture.
Our life is like a puzzle. We can only see one piece at a time. We are not able to see the entire picture. We fumble and we fail trying to find our place. We think we fit here and then something else comes up and we find that was not the right place. Sometimes our pieces are so dark and it seems near impossible to be able to even attempt to find where the piece fits. Sometimes we work on one side of the puzzle when we should be at the exact opposite corner.
God, however, sees the entire picture. He has created a masterpiece and we must trust in His plan that He will finish the good work He started. He knows what the picture on the box looks like. He knows where every piece fits together and He knows how they fit together. We don't have to fumble around trying to find our place, He will guide us.
Even when we are in a dark place, the light will come soon and it will be glorious. But we must not give up because each and every piece is needed to make the final masterpiece. He works everything for the good of those who love Him. Every trial, every dark spot, every circumstance all has purpose and meaning in His timing and in His plan. We are not meant to understand but to trust and to allow Him to create us to be the servants He wants us to be.
As I have struggled a lot lately, I have thought over and over about this. It is so true but so hard. I think back to days before Lydia and that seems like such a long time ago. Sometimes I cringe to think of the person I was before her. Sometimes my life now is so much a part of who I am, I cannot fathom that life anymore.
The daily tasks of Lydia have been wearing me down. Feeding her, trying to figure out what she will eat, making sure she gets enough to eat, juggling her health and education, managing her doctor appointments and her therapy appointments. Trying to make time to have her just be a kid. Trying to parent two other girls and making sure I am meeting their needs. Trying to put time in on my marriage to make sure that is healthy (if that is not healthy than none of my other relationships with my kids are healthy). And trying to find quiet time to study God's Word and let Him pour himself on me (I often struggle with this, but this is the most important part of my day). And then with whatever little time is left, I try to work on me (keeping fit, eating right, taking time just for me, exploring hobbies).
This is the path that was chosen for me. I have to remind myself of that every single day. Some days I struggle with it. Some days I want to curl up and cry. My child is so far behind. That is a hard pill to swallow at times. I compare her to other kids with Down syndrome and see that she is even farther behind than they are and I wonder if I am doing everything that I should be doing. I know I shouldn't do that, but this is reality. I want the best for my child and sometimes I think that love is not enough (I know that's a foolish thought, but it's true). **She is also on a chosen path, just for her. She was not meant to have 46 Chromosomes, she was meant to have 47. She was not meant to have a "normal" anatomy. She is right where God wants her and she is teaching others about self confidence, happiness and true joy. She also is right where she is meant to be!
Sometimes when we are sitting in a room with many doctors and we are trying to figure out what is wrong with Lydia, I feel like I am crazy. They shake their head, knowing something is not right, but there are no answers. When there are no answers I question myself, my ability, and wonder if this is all just made up. I doubt when I should not. But it makes me go crazy trying to think about what to do next. I know people around me have given me those stares and seem to whisper behind me (I think this is probably just my insecurity but this is what I feel). I try to convince myself I am crazy. When in all reality, I am doing what God wants me to do. He alone has placed me on this path and if I am looking to Him and following in His ways, then I should not doubt.
This is the life that was chosen for me. With God's help I can overcome these doubts and insecurities, I can rise and become the very best mom to all of my girls; just as God chose me to do. With God's help I can be the very best wife to my loving husband and I can be a faithful devoted disciple. It is possible; but not on my own.
And to look to someone else's journey and judge is not fair either. They were chosen for something different. I feel like if I could understand this better, I may be able to help someone out and I may not feel so judged. I don't think I ever expect someone to understand my journey, but I should not then try to understand someone else's either. I can share my story in hopes that someone might be going through the same things and can get hope from my path.
Sometimes it does feel lonely. I have seen it all too often people pull away because they don't understand, they are scared of your circumstance, or because you have changed. However, we must remember we all go through seasons and God gives us the blessing of true friends. God is also always there for us. He will never leave us nor forsake us. Mary and Elizabeth in the Bible were given similar circumstances and they could support one another. While God is the ultimate hope, it never hurts to have earthly friends for support and help.
But sometimes I forget that I was chosen for this journey and not someone else. I am quick to judge and pass judgment. I am quick to feel alone and I try to handle things on my own. I forget I have the ultimate friend, I have unconditional love, I have forgiveness, grace, mercy, discipline, and if I am willing to obey Him, He is willing to bless me.
On this journey, I was chosen to learn certain things, not anyone else. On their journey, they were chosen to learn their own things. However, I can come alongside someone and be a friend, I can encourage and I can help. I have to remind myself of this because I can get wrapped up in my own circumstance very easily. I have to remember to continually seek to glorify God in every situation and circumstance. I also have to remember that I am only accountable for my actions, so I better continue to look at myself and see how I can improve on me.
And because I was chosen I am a better person, I have learned some amazing lessons, I have faced some very unthinkable situations, I have been tested to my max, and I have failed, and I have been blessed. I have changed who I am, how I think, how I love, and I have become a better person; all because I was chosen.
For me, it was one special child that God gave me so I could learn these lessons. Sometimes I have to remind myself over and over and over in the heat of pain, frustration, anger, exhaustion. But in the end, to see that smile, to feel her hug, and to watch her progress is such a blessing. It really is all I need. And when my eyes are rightly fixed on Him, I can look on even the hardest time and bring Him glory because He loved me enough to choose me to be right here!
Monday, November 24, 2014
A Heart of Gratitude
When I walked out the door on July 25, 2011 I knew things would change. I didn't know if my arms would be holding a baby, I didn't know if I would find myself on bed rest for a week, I didn't know if my baby would make it, I didn't even know the fullness of my baby's struggles as they did not have a diagnosis. I certainly did not know how I would change.
It is Thanksgiving heading into Christmas and everyone seems to be thankful and giving and caring. However, one thing that I have learned is a heart of gratitude. I would argue that it is more than being thankful, especially just around a season. It is more than just giving to make myself feel good. I would argue that a heart of gratitude is a lifestyle, is a way of living, a way of thinking.
Having Lydia has changed me, taught me, stretched me and even made me crazy! But I am not the same person I was when I walked out that door and I never will be that person again. We all experience things in life that completely change us, that make us stronger, that allow us to rely on God more, that restore our faith in humanity, that stretches us and changes us and molds us into the person God is creating us to be. Each little hurdle, each celebration, each trial, each time of discipline brings us closer to who He wants us to be; if we only allow Him.
When I reflect back and think about who I was prior to walking out the door on July 25, 2011 I cringe because that person is so far from who I am today. I was a very critical analyst of everyone who crossed my path, I very seldom thought of other people, I tried to gather everything for me and my family and stock piled it for a later date, I was constantly thinking of me and my family. It brings tears to my eyes that I could not see the cold bitter life I was leading.
However, God gave me a life changing event in many aspects on July 25, 2011. I did have a baby, but I was not holding that baby. I was wondering how she was doing, what she looked like, I couldn't even imagine a future for her. As they wheeled me to see her I cried because my arms ached. When they pushed me into her room I was able to peer into her little medical crib and saw wires and tubes attached to this precious life. Immediately a code was called and I was rushed back to my room, in another hospital. There was blood everywhere. It took them several hours for them to get me stable, but I wasn't able to see that little girl, she lay alone in a hospital room with no mom. How my heart ached.
That was only the beginning. There were surgeries and procedures. There was sickness that kept her away from many people. There were days that we never got sleep because we did not know if God would allow life for our daughter. There were days where the doctors scratched their heads, consulted, and were unsure of the next steps. There were many times when we saw life and death in our daughter. There were many times that prayer and hope was all that we had.
God allowed life for her and we were able to bring her home. Feeding issues set in. We were told that she would never eat, that it would be better to place her in an institution. How can I do that to my daughter? She is mine and she was made just for our family. We would be missing something if we put her in an institution. No, that was not an option.
Long days turned into long weeks, which turned into long months, and eventually into years to get this child to eat and eat enough to get her to gain weight. Struggle upon struggle we faced with her. Doctors upon doctors we discussed things with. Wait and see was usually our answer. Praying and hoping that God would allow her to continue with life.
When I left that day, I had a bag packed for the hospital. I had maybe a little more clothes that you usually would, but maybe just a week of maternity clothes and comfy clothes. When I called my mom to tell her there would be a baby that night, the girls quickly packed whatever they could find and came. A hotel would be their place to call home until we could find out more information. A conference in town made them bounce here and there until there was room for us at the Ronald McDonald House.
A home at last at the Ronald McDonald House. We had really nothing. While we had a home, it was not home anymore because my daughter was not there. I could not enter that house, it was just a placed that was filled with stuff, not meaning anything to me anymore. The house was under construction so there was really no finding stuff. Our neighbors and friends were busily trying to finish the project we had started. It was a place that was cold and so distance. A small room with two twin beds, a small bathroom, and a tiny closet was our new home. And it did not matter because that was the only place we could be together as one complete family.
As the weeks turned into months at the Ronald McDonald House the beautiful sunshine quickly started hiding more and more. The leaves started showering us with a beautiful picture show every day and then there were no leaves on the trees anymore. The wind howled and blew and the snow flew. None of us had stuff to wear and I could not bring myself to that place that stored all of my once precious treasures, the place I once called home.
There were people all over that were praying for us, that were providing gas cards for my husband to make a two hour commute one way to work. There were people in our new community that supported the Ronald McDonald house and provided all kinds of needs. There was a school that we were now part of and the most gracious of people who offered their houses for the many holidays we were there, who cooked us meals, who included my children in play dates and parties. There were acts of kindness that were beyond my imagination that complete strangers would do for someone else.
My heart was being changed in ways that I could not explain. Gratitude I have come to learn is not just something that you do, it is a lifestyle. When my eyes are fixed upon God I am not thinking about myself and I am serving other people. I am looking for ways to be the hands and feet of God. It is so amazing and a huge lifestyle change. It has also become a way to be content and happy. And it is not just an outward appearance but an inward change.
I have learned that things are just things. Being in the hospital (and at the Ronald McDonald House) during a Holiday really makes you learn about what's important. I remember one of the best Thanksgiving's we have had as a family. The girls put a blanket on the floor of the hospital and played Cootie with their sister, we talked to a cardiologist about Lydia's Open Heart Surgery she would be having in three days, we prepared a feast for the nurses on the floor, and the girls hand delivered flowers they had made for all of the nurses. We were so thankful for those nurses and that is what it is really all about.
I remember Christmas. Lydia had just had Open Heart Surgery and was intubated and recovering. I remember shopping that year and it was so different. I would have paid any amount of money to buy health. But that is not possible. Instead I learned a lot about faith and was thankful for the breath of life our family had that day. While we had gotten a few gifts, it was about the memories, the relationships, and the time we spent together. I remember we got Gyro bowls for the girls. Our nurse Kathy gave them ice cream in them. When the medical director came in our room to talk with us, she asked if the bowls actually worked. Just like clock work, the girls tipped them upside down while holding the sides of the bowls and the ice cream dropped on the floor. We had a great laugh. It is in moments like that that mean the world.
Gratitude is more than a day of giving thanks, it is a lifestyle that changes you in ways you cannot imagine. Because of Lydia, because of this journey, I have been blessed enough to learn about it. I have experienced a change in life that takes the focus off of me and puts it on others. That is the only way that I can take care of my children and especially Lydia. What a blessing it has been.
Each day we have been given is a gift, it is a precious gift. I am so glad that I have been chosen to learn these lessons. Lydia drives me to the point of going crazy, but she has taught me some of the most precious life lessons ever. And I find it so amazing that such a young girl can teach such big things.
Life is precious and when we learn to live in the moment, celebrate every milestone, and take nothing for granted, it is such a beautiful thing. When we learn that relationships are the most important thing and are worth investing everything we have in, we are rich. God wants our time, He wants a relationship. I have learned this and I have been so blessed because of it. My time that I give to my girls and husband are never wasted.
May you have a most enjoyable Thanksgiving. May you be thankful right where you are at, no matter what your circumstance is. God bless you.
It is Thanksgiving heading into Christmas and everyone seems to be thankful and giving and caring. However, one thing that I have learned is a heart of gratitude. I would argue that it is more than being thankful, especially just around a season. It is more than just giving to make myself feel good. I would argue that a heart of gratitude is a lifestyle, is a way of living, a way of thinking.
Having Lydia has changed me, taught me, stretched me and even made me crazy! But I am not the same person I was when I walked out that door and I never will be that person again. We all experience things in life that completely change us, that make us stronger, that allow us to rely on God more, that restore our faith in humanity, that stretches us and changes us and molds us into the person God is creating us to be. Each little hurdle, each celebration, each trial, each time of discipline brings us closer to who He wants us to be; if we only allow Him.
When I reflect back and think about who I was prior to walking out the door on July 25, 2011 I cringe because that person is so far from who I am today. I was a very critical analyst of everyone who crossed my path, I very seldom thought of other people, I tried to gather everything for me and my family and stock piled it for a later date, I was constantly thinking of me and my family. It brings tears to my eyes that I could not see the cold bitter life I was leading.
However, God gave me a life changing event in many aspects on July 25, 2011. I did have a baby, but I was not holding that baby. I was wondering how she was doing, what she looked like, I couldn't even imagine a future for her. As they wheeled me to see her I cried because my arms ached. When they pushed me into her room I was able to peer into her little medical crib and saw wires and tubes attached to this precious life. Immediately a code was called and I was rushed back to my room, in another hospital. There was blood everywhere. It took them several hours for them to get me stable, but I wasn't able to see that little girl, she lay alone in a hospital room with no mom. How my heart ached.
That was only the beginning. There were surgeries and procedures. There was sickness that kept her away from many people. There were days that we never got sleep because we did not know if God would allow life for our daughter. There were days where the doctors scratched their heads, consulted, and were unsure of the next steps. There were many times when we saw life and death in our daughter. There were many times that prayer and hope was all that we had.
God allowed life for her and we were able to bring her home. Feeding issues set in. We were told that she would never eat, that it would be better to place her in an institution. How can I do that to my daughter? She is mine and she was made just for our family. We would be missing something if we put her in an institution. No, that was not an option.
Long days turned into long weeks, which turned into long months, and eventually into years to get this child to eat and eat enough to get her to gain weight. Struggle upon struggle we faced with her. Doctors upon doctors we discussed things with. Wait and see was usually our answer. Praying and hoping that God would allow her to continue with life.
When I left that day, I had a bag packed for the hospital. I had maybe a little more clothes that you usually would, but maybe just a week of maternity clothes and comfy clothes. When I called my mom to tell her there would be a baby that night, the girls quickly packed whatever they could find and came. A hotel would be their place to call home until we could find out more information. A conference in town made them bounce here and there until there was room for us at the Ronald McDonald House.
A home at last at the Ronald McDonald House. We had really nothing. While we had a home, it was not home anymore because my daughter was not there. I could not enter that house, it was just a placed that was filled with stuff, not meaning anything to me anymore. The house was under construction so there was really no finding stuff. Our neighbors and friends were busily trying to finish the project we had started. It was a place that was cold and so distance. A small room with two twin beds, a small bathroom, and a tiny closet was our new home. And it did not matter because that was the only place we could be together as one complete family.
As the weeks turned into months at the Ronald McDonald House the beautiful sunshine quickly started hiding more and more. The leaves started showering us with a beautiful picture show every day and then there were no leaves on the trees anymore. The wind howled and blew and the snow flew. None of us had stuff to wear and I could not bring myself to that place that stored all of my once precious treasures, the place I once called home.
There were people all over that were praying for us, that were providing gas cards for my husband to make a two hour commute one way to work. There were people in our new community that supported the Ronald McDonald house and provided all kinds of needs. There was a school that we were now part of and the most gracious of people who offered their houses for the many holidays we were there, who cooked us meals, who included my children in play dates and parties. There were acts of kindness that were beyond my imagination that complete strangers would do for someone else.
My heart was being changed in ways that I could not explain. Gratitude I have come to learn is not just something that you do, it is a lifestyle. When my eyes are fixed upon God I am not thinking about myself and I am serving other people. I am looking for ways to be the hands and feet of God. It is so amazing and a huge lifestyle change. It has also become a way to be content and happy. And it is not just an outward appearance but an inward change.
I have learned that things are just things. Being in the hospital (and at the Ronald McDonald House) during a Holiday really makes you learn about what's important. I remember one of the best Thanksgiving's we have had as a family. The girls put a blanket on the floor of the hospital and played Cootie with their sister, we talked to a cardiologist about Lydia's Open Heart Surgery she would be having in three days, we prepared a feast for the nurses on the floor, and the girls hand delivered flowers they had made for all of the nurses. We were so thankful for those nurses and that is what it is really all about.
I remember Christmas. Lydia had just had Open Heart Surgery and was intubated and recovering. I remember shopping that year and it was so different. I would have paid any amount of money to buy health. But that is not possible. Instead I learned a lot about faith and was thankful for the breath of life our family had that day. While we had gotten a few gifts, it was about the memories, the relationships, and the time we spent together. I remember we got Gyro bowls for the girls. Our nurse Kathy gave them ice cream in them. When the medical director came in our room to talk with us, she asked if the bowls actually worked. Just like clock work, the girls tipped them upside down while holding the sides of the bowls and the ice cream dropped on the floor. We had a great laugh. It is in moments like that that mean the world.
Gratitude is more than a day of giving thanks, it is a lifestyle that changes you in ways you cannot imagine. Because of Lydia, because of this journey, I have been blessed enough to learn about it. I have experienced a change in life that takes the focus off of me and puts it on others. That is the only way that I can take care of my children and especially Lydia. What a blessing it has been.
Each day we have been given is a gift, it is a precious gift. I am so glad that I have been chosen to learn these lessons. Lydia drives me to the point of going crazy, but she has taught me some of the most precious life lessons ever. And I find it so amazing that such a young girl can teach such big things.
Life is precious and when we learn to live in the moment, celebrate every milestone, and take nothing for granted, it is such a beautiful thing. When we learn that relationships are the most important thing and are worth investing everything we have in, we are rich. God wants our time, He wants a relationship. I have learned this and I have been so blessed because of it. My time that I give to my girls and husband are never wasted.
May you have a most enjoyable Thanksgiving. May you be thankful right where you are at, no matter what your circumstance is. God bless you.
Friday, November 7, 2014
A Stronger Choice
As a parent of a child with special needs I hear often about how strong I am. I hear about how God chooses the perfect family. I hear about how blessed I am. I see those greeting cards about how I can do anything because I am a mom who has a child with special needs. If this is the case, why do I feel so lost and confused? Why do I feel like I am the weakest person I know?
I don't have any answers. I will not pretend that I am something I am not. I know that right now I feel very lost. I feel in a place of complete confusion. The first couple of months with Lydia I was thrown into a world that was completely foreign to me. My daughter was sick, very sick. I researched and learned so many things that never interested me before. The only reason that I was doing this was because I needed to make a decision for my daughter. I loved her and I wanted to make the best decision possible. The only way that I could do that was to familiarize myself with things that were so unfamiliar. I had to step outside of my comfort zone and make a strong choice.
And now as we continue to deal with medical challenges, and challenges that are not so easy. There are many complexities to Lydia, her anatomy, and how we treat when she gets sick. There are many things that we have to balance. Things many people do not understand because they have not walked this journey. But added to this mix, we are now entering school and I don't know what the best is for her. Sometimes I wonder if the experts know the best for her. Sometimes I feel so confused and overwhelmed by it all. I want to do the very best for her and I am often left wondering what that is. But I push through and I make the strong choice to love her and continue to step further outside of my comfort zone.
I continue to live in a state that is completely foreign. I research, I read, I talk to people and I keep pushing towards that gut mommy feeling. It's a feeling that is hard to stand up against people who have MD at the end of their name or a Master's Degree, but I have found that has made all of the difference. "I am mom and I know her best and I think this is what should be done." That is a hard sentence for me. I have learned, however, that this is a very important piece of making decisions for her.
I live with this child every day. I take care of her every need. I sacrifice things for me, my husband, and my other girls for her. I choose to love her and this is how I know to do it, sacrificing for her. I don't wear a cape of any sort, I am not special and most days I am not strong. I was chosen for this journey but it is still my choice to live it out. It is the stronger choice I make every day to wake up and face the challenges that have been written for my life.
The stronger choice, in my opinion, is to keep fighting, to keep speaking up, to keep pushing for answers, to keep looking for the very best for my daughter. It is a choice, just like love is, that we make every day. There are no special needs super hero powers that are given to special needs families, or at least mine. I don't want someone to think that either.
However, because I make the choice to honor God through what He gave me, I am blessed. I am blessed in many ways. I have learned many lessons that have changed me, that affect who I am and how I handle myself. I am blessed because I get to see life through a different lens and it is a fun ride. I am blessed because I have learned the importance of celebrating every small milestone and embracing each moment. I am blessed because I have made the stronger choice. I am blessed because I have taken the road less traveled. It is true, that if it is worth it, it will be hard!
I am blessed too because my daughter gives me strength and she inspires me. She handles her life with grace and dignity. She loves without boundaries. She smiles through blood draws and she gives her sisters' hugs when they are down. She is more concerned with other people and their feelings, even when she is sick. She sees the souls of people and she has a twinkle in her eye that is contagious. She never complains about the many doctor visits and procedures, she makes the best of very situation. She inspires me for so many reasons and she makes it easy to keep choosing to make the stronger choice.
If I have learned one thing along our journey, it is that medicine is trial and error. When making decisions, you are your child's best advocate. They need your voice. You have an important element in every decision because you know them best. We have found this out with school placement, therapy, her health, and just how to treat her in general. She needs that voice and when I make the stronger choice, she wins.
I am not strong, I am actually very weak. Most days I don't want to get out of bed. Most days I whine and complain about the lot given to me. Most days I don't handle the stress of everything very well. However, most days I am completely inspired by her, most days I am blessed, and most days I just look at her and I feel energized. Making the stronger choice is the best thing I have done. No one said life was going to be easy, perfect, or awesome. But the little extra that Lydia gives to me makes me think I am in heaven.
I don't have any answers. I will not pretend that I am something I am not. I know that right now I feel very lost. I feel in a place of complete confusion. The first couple of months with Lydia I was thrown into a world that was completely foreign to me. My daughter was sick, very sick. I researched and learned so many things that never interested me before. The only reason that I was doing this was because I needed to make a decision for my daughter. I loved her and I wanted to make the best decision possible. The only way that I could do that was to familiarize myself with things that were so unfamiliar. I had to step outside of my comfort zone and make a strong choice.
And now as we continue to deal with medical challenges, and challenges that are not so easy. There are many complexities to Lydia, her anatomy, and how we treat when she gets sick. There are many things that we have to balance. Things many people do not understand because they have not walked this journey. But added to this mix, we are now entering school and I don't know what the best is for her. Sometimes I wonder if the experts know the best for her. Sometimes I feel so confused and overwhelmed by it all. I want to do the very best for her and I am often left wondering what that is. But I push through and I make the strong choice to love her and continue to step further outside of my comfort zone.
I continue to live in a state that is completely foreign. I research, I read, I talk to people and I keep pushing towards that gut mommy feeling. It's a feeling that is hard to stand up against people who have MD at the end of their name or a Master's Degree, but I have found that has made all of the difference. "I am mom and I know her best and I think this is what should be done." That is a hard sentence for me. I have learned, however, that this is a very important piece of making decisions for her.
I live with this child every day. I take care of her every need. I sacrifice things for me, my husband, and my other girls for her. I choose to love her and this is how I know to do it, sacrificing for her. I don't wear a cape of any sort, I am not special and most days I am not strong. I was chosen for this journey but it is still my choice to live it out. It is the stronger choice I make every day to wake up and face the challenges that have been written for my life.
The stronger choice, in my opinion, is to keep fighting, to keep speaking up, to keep pushing for answers, to keep looking for the very best for my daughter. It is a choice, just like love is, that we make every day. There are no special needs super hero powers that are given to special needs families, or at least mine. I don't want someone to think that either.
However, because I make the choice to honor God through what He gave me, I am blessed. I am blessed in many ways. I have learned many lessons that have changed me, that affect who I am and how I handle myself. I am blessed because I get to see life through a different lens and it is a fun ride. I am blessed because I have learned the importance of celebrating every small milestone and embracing each moment. I am blessed because I have made the stronger choice. I am blessed because I have taken the road less traveled. It is true, that if it is worth it, it will be hard!
I am blessed too because my daughter gives me strength and she inspires me. She handles her life with grace and dignity. She loves without boundaries. She smiles through blood draws and she gives her sisters' hugs when they are down. She is more concerned with other people and their feelings, even when she is sick. She sees the souls of people and she has a twinkle in her eye that is contagious. She never complains about the many doctor visits and procedures, she makes the best of very situation. She inspires me for so many reasons and she makes it easy to keep choosing to make the stronger choice.
If I have learned one thing along our journey, it is that medicine is trial and error. When making decisions, you are your child's best advocate. They need your voice. You have an important element in every decision because you know them best. We have found this out with school placement, therapy, her health, and just how to treat her in general. She needs that voice and when I make the stronger choice, she wins.
I am not strong, I am actually very weak. Most days I don't want to get out of bed. Most days I whine and complain about the lot given to me. Most days I don't handle the stress of everything very well. However, most days I am completely inspired by her, most days I am blessed, and most days I just look at her and I feel energized. Making the stronger choice is the best thing I have done. No one said life was going to be easy, perfect, or awesome. But the little extra that Lydia gives to me makes me think I am in heaven.
Saturday, October 25, 2014
Real Awareness
I was preparing food in the concessions stand for the girl's volleyball. It was crazy busy and we were a man down. I have to say we were a little unprepared. One of the girl's from the team came out and said "Mrs. Spoor, you are needed out on the court." I washed my hands and walked into the gym. Our principal was talking about Down syndrome. I did not think too much of it since we were having a Dig 4 Down syndrome night.
Catching me completely off guard, I heard, Mrs. Spoor and Lydia would you come to the center of the court? I scooped up Lydia and off we went. They were honoring Lydia. The senior from the volleyball team came out and gave Lydia a rose. She smiled and cheered with delight. She went to the principal to get closer to the microphone. Typically, when given a chance, she will sing and chat away into the microphone. Not this time.
However, when the principal said it was time to play volleyball, she raised her rose above her head and shook it and giggled again. It was a true humbling experience that the entire school would honor this little girl. That this little girl was so loved and respected. That the volleyball team would want to raise awareness and money for Down syndrome.
A couple months ago the coach of the volleyball team had this great idea of doing Dig 4 Down syndrome. I know that a lot of teams wear pink for Breast Cancer Awareness, however, that does not personally affect anyone at the school. It also seems to be a bit of a fad. It is amazing to raise so much awareness. But for me, Down syndrome is personal, it affects my family. We participate in the Down syndrome awareness walk (we even did two this year) and I write about Down syndrome and I have a Facebook page highlighting Lydia's achievements. I never imagined that our school would want to create awareness too!
A couple years ago, upon returning from our prolonged experience in the hospital with Lydia, we knew that private school was the best option for our family. There are several reasons why, but having an education that is Christ-centered was very important. We searched high and low for a school that we could financially afford (we had some other kids coming up on the horizion) and we wanted a school that would take Lydia.
After touring many schools, we found one that felt like home. It was a bonus too that they were willing to take Lydia. And they were not just willing to take her, they wanted her there. We keep evaluating how well she is doing and if this will work out, but so far, so good. I do think that it makes all of the difference that Lydia is with her sisters, she knows she is in a place where she is wanted, and her disability is not center stage. The bar is set high and she is rising to it. They understand her strengths and capitalize on that.
I can't say enough about this wonderful school. Such an amazing thing that they have done for our family and especially for Lydia. I think that it is great that the coach recognized that Down syndrome is something that directly impacts these students and chose to highlight that!
We were able to put up facts all around to educate others about Down syndrome. We were able to sell T-Shirts to continue to create awareness about Down syndrome and we were able to expose a lot of people to Down syndrome. The best way to create awareness is to face it head on. Lydia walked around giving high fives, smiling and giggling. It take a moment for her to capture your heart, having you smile and realizing that she is more alike than different.
As a team, a school, and a community, there was a lot of money raised. It will go towards a local Down syndrome chapter where all of the money stays and supports families like ours. That money will give back to the community, help families out and make a real impact.
What a great idea to show the volleyball team the importance of serving others, having fun, and helping others out. It was a win all the way around.
Full inclusion is an important thing. We are so blessed that Lydia is where she is at. We are even more blessed that our school rallies behind her and is not afraid to show her support. I have to say that being part of this event was very humbling and really gave me encouragement. Inclusion is important for everyone and makes all students better. These lessons are ones that cannot be taught, they must be learned. What a great thing for all involved! We are in the right place.
Thanks Trinity Baptist School for all of your support and love for Lydia. Thank you to Miss Leeds for the great idea and implementation for Dig 4 Down syndrome. Thank you Mr. Shaeffer for your support and encouragement to everyone. And thank you to the volleyball team for playing a very hard fought battle and loving Lydia! Way to go Patriots!
Catching me completely off guard, I heard, Mrs. Spoor and Lydia would you come to the center of the court? I scooped up Lydia and off we went. They were honoring Lydia. The senior from the volleyball team came out and gave Lydia a rose. She smiled and cheered with delight. She went to the principal to get closer to the microphone. Typically, when given a chance, she will sing and chat away into the microphone. Not this time.
However, when the principal said it was time to play volleyball, she raised her rose above her head and shook it and giggled again. It was a true humbling experience that the entire school would honor this little girl. That this little girl was so loved and respected. That the volleyball team would want to raise awareness and money for Down syndrome.
A couple months ago the coach of the volleyball team had this great idea of doing Dig 4 Down syndrome. I know that a lot of teams wear pink for Breast Cancer Awareness, however, that does not personally affect anyone at the school. It also seems to be a bit of a fad. It is amazing to raise so much awareness. But for me, Down syndrome is personal, it affects my family. We participate in the Down syndrome awareness walk (we even did two this year) and I write about Down syndrome and I have a Facebook page highlighting Lydia's achievements. I never imagined that our school would want to create awareness too!
A couple years ago, upon returning from our prolonged experience in the hospital with Lydia, we knew that private school was the best option for our family. There are several reasons why, but having an education that is Christ-centered was very important. We searched high and low for a school that we could financially afford (we had some other kids coming up on the horizion) and we wanted a school that would take Lydia.
After touring many schools, we found one that felt like home. It was a bonus too that they were willing to take Lydia. And they were not just willing to take her, they wanted her there. We keep evaluating how well she is doing and if this will work out, but so far, so good. I do think that it makes all of the difference that Lydia is with her sisters, she knows she is in a place where she is wanted, and her disability is not center stage. The bar is set high and she is rising to it. They understand her strengths and capitalize on that.
I can't say enough about this wonderful school. Such an amazing thing that they have done for our family and especially for Lydia. I think that it is great that the coach recognized that Down syndrome is something that directly impacts these students and chose to highlight that!
We were able to put up facts all around to educate others about Down syndrome. We were able to sell T-Shirts to continue to create awareness about Down syndrome and we were able to expose a lot of people to Down syndrome. The best way to create awareness is to face it head on. Lydia walked around giving high fives, smiling and giggling. It take a moment for her to capture your heart, having you smile and realizing that she is more alike than different.
As a team, a school, and a community, there was a lot of money raised. It will go towards a local Down syndrome chapter where all of the money stays and supports families like ours. That money will give back to the community, help families out and make a real impact.
What a great idea to show the volleyball team the importance of serving others, having fun, and helping others out. It was a win all the way around.
Full inclusion is an important thing. We are so blessed that Lydia is where she is at. We are even more blessed that our school rallies behind her and is not afraid to show her support. I have to say that being part of this event was very humbling and really gave me encouragement. Inclusion is important for everyone and makes all students better. These lessons are ones that cannot be taught, they must be learned. What a great thing for all involved! We are in the right place.
Thanks Trinity Baptist School for all of your support and love for Lydia. Thank you to Miss Leeds for the great idea and implementation for Dig 4 Down syndrome. Thank you Mr. Shaeffer for your support and encouragement to everyone. And thank you to the volleyball team for playing a very hard fought battle and loving Lydia! Way to go Patriots!
Friday, October 10, 2014
Insert Generic Title for Down Syndrome Awareness Month
It is October 10. 10 days into Down syndrome awareness month. This is my first post. Last year I blogged every day for 31 days (31 for 21). I have seen my Facebook page lit up with posts about Down syndrome. Something has stopped me from writing, from posting a whole lot (I am sure I still post quite a bit). I enjoy seeing the posts and I really want to educate and make a difference.
However, after my last encounter of feeling as though I needed to defend why I had my daughter, I have paused to reflect. I have read the comments as my blog was shared and people weighed in. I was not offended, we all have our own opinion. I just took time to reflect. I asked myself if I did the right thing by walking away or should I have educated the person? For me, the right thing was to walk away. I don't have to defend why I had Lydia and I don't have to force her upon people. I have understood that my words will not change everyone's opinions or behaviors, and I am OK with that. But I also recognize that I don't have to be in a situation where I have to hear demeaning comments about my daughter, walking away with a smile I think sends a loud enough message for me!
And in the past couple of weeks, I have seen my daughter do the unthinkable and become very ill. This is the life we live, this is who she is. We have reached the 3 year post op anniversary of her surgery that connected her, that allowed her to eat. On that same day she preformed in front of many grandparents for the very first time. She is completely inclusive in the private school that our other girls attend. There were times that I never thought that they would all be together, much less all sing together. I did everything I could to choke back the tears. She was amazing (if you want to see the video you can go to www.facebook.com/teamlydibug). I was told she would never amount to anything and she should be institutionalized. She did better than most of her peers (speech or no speech), she put her whole heart into it and it was great! My miracle!
And later that night Lydia fell ill. While she did not have to make a return appearance to the hospital, I am pretty sure that this is the worse she ever looked. She lost a lot of weight and when she looked me in the eye, the illness had stolen her twinkle. It is exhausting rocking a sick child, wondering if she will make it through, and putting all of your needs aside for your child. However, when the twinkle starts to come back, it is a huge celebration! There is nothing that can describe that feeling.
I have been looking at the posts and seeing all of these cuties who rock a little extra. See, in my mind, I can't begin to understand why people think that Lydia's life is less than the next person. I can't begin to wrap my mind around why people think they can determine life based on a label (because after all, a diagnosis is just a label, it can't describe the person either). I know you have heard it before, what if we all came with a prenatal label that would tell us what we would do in life. What if I knew that I was going to get breast cancer, would my life be less valuable because I would incur medical bills and I would have to fight to stay alive, I would have ongoing medical needs? Absurd! What difference does it make if a person is born sick or gets sick during the course of their life? I have come to realize that those labels help shape us to become the people we are today. And those labels certainly cannot determine the quality of life, the kind of person they will be, or really anything about that person.
As Lydia put a challenge out, educate yourself and get to know someone with Down syndrome, I would like to challenge you to that as well. Our fears and preconceptions rob us from blessings. Think back to high school and that heart throb. What kept you from asking him out? What kept you from that cute "nerd" who sat in the front of the classroom? Those labels, I am sure, do not define who they are today?
Down syndrome is not the first defect that has a label. There are all kinds of things in society that have labels. Some are good and some are bad. We must first get to know the person. We must first be educated on things. It is only then we can understand the blessing we are missing. There are a lot of wrong facts out there about Down syndrome. The only way you will know the entire story is to get to know the person.
Maybe that is one of the biggest blessings that I have learned on this journey. I have learned to look past the things that society says are not socially acceptable. It is only then I can have some of the best friendships and relationships. My children are better girls because they know how to look past the labels. They get to know people for who they are on the inside. Labels inform us, they do not define us.
Just as my title on this blog is generic, the message is too! I think this is what we all hope for as parents. Get to know my kid and accept them for who they are. In Lydia's case part of her is Down syndrome and medical issues. However, most of her is love, goofiness, determination, friendship, caring, giving, and making others laugh. There is so much about her that Down syndrome cannot describe.
For Down syndrome awareness month, Lydia's challenge is to educate yourself and get to know someone with Down syndrome. It will change you for the better, it will change our communities, and it will reduce the number of times that parents have to defend why they chose life for their child with Down syndrome. I know not everyone will accept the challenge, will have the same opinions as me, but if we can respect one another by being educated, we are on a great step forward!
However, after my last encounter of feeling as though I needed to defend why I had my daughter, I have paused to reflect. I have read the comments as my blog was shared and people weighed in. I was not offended, we all have our own opinion. I just took time to reflect. I asked myself if I did the right thing by walking away or should I have educated the person? For me, the right thing was to walk away. I don't have to defend why I had Lydia and I don't have to force her upon people. I have understood that my words will not change everyone's opinions or behaviors, and I am OK with that. But I also recognize that I don't have to be in a situation where I have to hear demeaning comments about my daughter, walking away with a smile I think sends a loud enough message for me!
And in the past couple of weeks, I have seen my daughter do the unthinkable and become very ill. This is the life we live, this is who she is. We have reached the 3 year post op anniversary of her surgery that connected her, that allowed her to eat. On that same day she preformed in front of many grandparents for the very first time. She is completely inclusive in the private school that our other girls attend. There were times that I never thought that they would all be together, much less all sing together. I did everything I could to choke back the tears. She was amazing (if you want to see the video you can go to www.facebook.com/teamlydibug). I was told she would never amount to anything and she should be institutionalized. She did better than most of her peers (speech or no speech), she put her whole heart into it and it was great! My miracle!
And later that night Lydia fell ill. While she did not have to make a return appearance to the hospital, I am pretty sure that this is the worse she ever looked. She lost a lot of weight and when she looked me in the eye, the illness had stolen her twinkle. It is exhausting rocking a sick child, wondering if she will make it through, and putting all of your needs aside for your child. However, when the twinkle starts to come back, it is a huge celebration! There is nothing that can describe that feeling.
I have been looking at the posts and seeing all of these cuties who rock a little extra. See, in my mind, I can't begin to understand why people think that Lydia's life is less than the next person. I can't begin to wrap my mind around why people think they can determine life based on a label (because after all, a diagnosis is just a label, it can't describe the person either). I know you have heard it before, what if we all came with a prenatal label that would tell us what we would do in life. What if I knew that I was going to get breast cancer, would my life be less valuable because I would incur medical bills and I would have to fight to stay alive, I would have ongoing medical needs? Absurd! What difference does it make if a person is born sick or gets sick during the course of their life? I have come to realize that those labels help shape us to become the people we are today. And those labels certainly cannot determine the quality of life, the kind of person they will be, or really anything about that person.
As Lydia put a challenge out, educate yourself and get to know someone with Down syndrome, I would like to challenge you to that as well. Our fears and preconceptions rob us from blessings. Think back to high school and that heart throb. What kept you from asking him out? What kept you from that cute "nerd" who sat in the front of the classroom? Those labels, I am sure, do not define who they are today?
Down syndrome is not the first defect that has a label. There are all kinds of things in society that have labels. Some are good and some are bad. We must first get to know the person. We must first be educated on things. It is only then we can understand the blessing we are missing. There are a lot of wrong facts out there about Down syndrome. The only way you will know the entire story is to get to know the person.
Maybe that is one of the biggest blessings that I have learned on this journey. I have learned to look past the things that society says are not socially acceptable. It is only then I can have some of the best friendships and relationships. My children are better girls because they know how to look past the labels. They get to know people for who they are on the inside. Labels inform us, they do not define us.
Just as my title on this blog is generic, the message is too! I think this is what we all hope for as parents. Get to know my kid and accept them for who they are. In Lydia's case part of her is Down syndrome and medical issues. However, most of her is love, goofiness, determination, friendship, caring, giving, and making others laugh. There is so much about her that Down syndrome cannot describe.
For Down syndrome awareness month, Lydia's challenge is to educate yourself and get to know someone with Down syndrome. It will change you for the better, it will change our communities, and it will reduce the number of times that parents have to defend why they chose life for their child with Down syndrome. I know not everyone will accept the challenge, will have the same opinions as me, but if we can respect one another by being educated, we are on a great step forward!
Wednesday, September 24, 2014
Never Gets Easier
We walked into the Post Office hand in hand. She was babbling and I was looking for the mail drop. I picked her up and she dropped the letters into the slot. We headed towards the door to leave, still hand in hand. We walked out and the rocks next to the flower garden caught Lydia's eyes. She liked the sound of the rustling leaves too. She sat down and I just smiled. As she was playing there was an older gentleman passing us on the sidewalk.
He looked over at Lydia and then he looked at me and said that babies with Down syndrome don't deserve to live. I looked at him and smiled. He went on to say more, but I scooped Lydia into my arms. Her cute short arms wrapped my neck and her little fingers gently rubbed my shoulders. I hugged her and politely walked to the car.
It never gets easier to hear the words that your child does not deserve to live. It never gets easier to defend why you chose life for your child. It never gets easier hearing the snares and snickers of other people. It doesn't get easier.
But what I learned today is that I have grown as Lydia's mom. As much as those words crushed my entire spirit, I know that she is not defined by them. Lydia gets her worth from God because that is who created her just as she is. He designed her perfectly. He intended her to have 47 Chromosomes, slanted eyes, stubby fingers, low tone, a smile that is contagious, more love than she knows what to do with, a heart of gold, a sassy attitude, and a caring heart. She is exactly who she was created to be and she has just as much right to live as any of us.
As I drove home the tears filled my eyes. I looked back at my miracle and just was filled with love and gratitude for being put on this journey. I have changed because of her. While I am sure I will most likely hear some mean comments, I know the truth. I know that because of her, because of those 47 Chromosomes I am a better person. I know that our family is better because of her. I also know that most times people say those malicious comments because they are uneducated.
I also know that those kind of people don't deserve more than a smile from me. I no longer have to defend my child or our decision for bringing her into this world. It was never a decision for us, she was our child that God placed in our family. Down syndrome, medical issues, and a sassy sassy attitude. That was all meant for our family. The only decision we made was to have a child and God knew the perfect child to place in our family.
Hearing such horrible comments will NEVER get easier. Those comments are etched in my mind. In weak moments I hear those comments and I wish they were never uttered. However, it makes me want to share Lydia's story more and more. There are so many good people. Most of the time I hear how cute she is, how they want to take her home, what a ham she is. There are far more good comments than bad ones. The bad ones, however, are just so terrible. How could you think that she does not deserve to live? She has more life in her than most people I know. She has done so much good in this world already and she is only three years old. And I don't think that any parent wants to feel as though they have to defend why their child should live, it really is just not a fun thing.
As I write I am amazed at what a difference it makes when we get our self worth from God and not from this world. When we truly understand what we have, nothing can tear us down. There is still a huge sting from the words, but it has not broken me down and it won't. It has allowed me to want to keep spreading Lydia's story, keep creating awareness and keep loving her. I love taking her out in public and I love seeing the joy she brings to just about anyone she meets.
I guess you have to take the bad with the good. And while I will never get use to hearing things like this about my daughter and I know that it will never get easier, I am OK with it. I know that it will not tear me down, I know that it does not define my daughter, I know that it will not break me anymore.
Please help educate about Down syndrome. While we have come so far in acceptance, there is still so much to do. We can make better communities by educating one person at a time. And I know it is in how I react too to these comments that will make a difference. I can smile and move on with my day knowing that, other than a few tears, it will not ruin me. I will pray for that gentleman and I will continue spreading the joy that Lydia brings to me each and every day. I am so blessed to have her!
He looked over at Lydia and then he looked at me and said that babies with Down syndrome don't deserve to live. I looked at him and smiled. He went on to say more, but I scooped Lydia into my arms. Her cute short arms wrapped my neck and her little fingers gently rubbed my shoulders. I hugged her and politely walked to the car.
It never gets easier to hear the words that your child does not deserve to live. It never gets easier to defend why you chose life for your child. It never gets easier hearing the snares and snickers of other people. It doesn't get easier.
But what I learned today is that I have grown as Lydia's mom. As much as those words crushed my entire spirit, I know that she is not defined by them. Lydia gets her worth from God because that is who created her just as she is. He designed her perfectly. He intended her to have 47 Chromosomes, slanted eyes, stubby fingers, low tone, a smile that is contagious, more love than she knows what to do with, a heart of gold, a sassy attitude, and a caring heart. She is exactly who she was created to be and she has just as much right to live as any of us.
As I drove home the tears filled my eyes. I looked back at my miracle and just was filled with love and gratitude for being put on this journey. I have changed because of her. While I am sure I will most likely hear some mean comments, I know the truth. I know that because of her, because of those 47 Chromosomes I am a better person. I know that our family is better because of her. I also know that most times people say those malicious comments because they are uneducated.
I also know that those kind of people don't deserve more than a smile from me. I no longer have to defend my child or our decision for bringing her into this world. It was never a decision for us, she was our child that God placed in our family. Down syndrome, medical issues, and a sassy sassy attitude. That was all meant for our family. The only decision we made was to have a child and God knew the perfect child to place in our family.
Hearing such horrible comments will NEVER get easier. Those comments are etched in my mind. In weak moments I hear those comments and I wish they were never uttered. However, it makes me want to share Lydia's story more and more. There are so many good people. Most of the time I hear how cute she is, how they want to take her home, what a ham she is. There are far more good comments than bad ones. The bad ones, however, are just so terrible. How could you think that she does not deserve to live? She has more life in her than most people I know. She has done so much good in this world already and she is only three years old. And I don't think that any parent wants to feel as though they have to defend why their child should live, it really is just not a fun thing.
As I write I am amazed at what a difference it makes when we get our self worth from God and not from this world. When we truly understand what we have, nothing can tear us down. There is still a huge sting from the words, but it has not broken me down and it won't. It has allowed me to want to keep spreading Lydia's story, keep creating awareness and keep loving her. I love taking her out in public and I love seeing the joy she brings to just about anyone she meets.
I guess you have to take the bad with the good. And while I will never get use to hearing things like this about my daughter and I know that it will never get easier, I am OK with it. I know that it will not tear me down, I know that it does not define my daughter, I know that it will not break me anymore.
Please help educate about Down syndrome. While we have come so far in acceptance, there is still so much to do. We can make better communities by educating one person at a time. And I know it is in how I react too to these comments that will make a difference. I can smile and move on with my day knowing that, other than a few tears, it will not ruin me. I will pray for that gentleman and I will continue spreading the joy that Lydia brings to me each and every day. I am so blessed to have her!
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